Alabama

Michael Staley takes a photo of himself with Wes Bates while cycling across Wyoming near Dubois on July 9, 2014, as part of the Ride4Gabe cross-country trip to raise awareness of Duchenne muscular dystrophy and a north Shelby County family’s 9-year-old boy with the genetic disease. (Courtesy)

Scott Griffin of north Shelby County and Michael Staley, who works as chief of staff for U.S. Rep. Spencer Bachus, get ready on June 23, 2014, to embark on a cross-country trip in which Staley will ride a bicycle from Oregon to Alabama to raise awareness for Scott and Traci Griffin's son, Gabe, who has a genetic disease called Duchenne muscular dystrophy. (Martin J. Reed / mreed@al.com)

Gabe Griffin, who has been diagnosed with the fatal disorder Duchenne muscular dystrophy, is traveling to Sioux Falls, S.D., on Friday with his mother, Traci, and brother Cooper to meet father Scott Griffin, who's been driving an RV as part of the cycling trip.

"Everywhere we go folks are asking if Gabe's on the trip," Scott Griffin said in a phone interview today while driving in eastern South Dakota just past the Missouri River. "Gabe can pop his little red head out of the RV and people can now put a face with the cause and see a normal looking redhead boy."

People can also hear how Gabe has Duchenne that causes a gradual deterioration of muscle tissue and "ultimately an early death," the father said. "I really think it makes it more impactful and drives our cause home. I think it's going to make a bigger difference than we're already made."

The genetic disease occurs predominantly in boys and affects about 15,000 people in the United States. It has been a death sentence with life expectancy ranging from late teens to some living into their 40s and 50s.

With Michael Staley, chief of staff for U.S. Rep. Spencer Bachus, and Wes Bates cycling from Astoria, Ore., to Mobile, the group hopes to raise awareness of the disease and an effort to use a drug called eteplirsen that has not received Food and Drug Administration approval.

Studies show it could drastically slow the progression of Duchenne -- and potentially save lives.

As part of Gabe's arrival, he will be able to take part in the Des Moines Register newspaper's gathering known as RAGBRAI, or the Register's Great Bike Ride Across Iowa, from Sunday through July 26.

"We're going to actually be able to have Gabe experience a bicycle ride for at least one day across Iowa," Staley said by phone from Winner, S.D. "We're going to go across as one big family all across Iowa and we're super excited about that."

The Ride4Gabe team is getting assistance from Mike Boone and the Adaptive Sports Iowa team. "They are going to outfit us to make it possible for Gabe to ride with us for at least one day," Staley said today.

"Adaptive Sports Iowa leads the only RAGBRAI team supporting athletes with physical disabilities," Boone said in a statement. "When we heard of the Ride4Gabe effort and their plans to ride RAGBRAI, I knew we had to provide assistance with any needs they had."

"We've had people pull over on the side of the road and say they heard us on the radio or saw us on the news and give us all the money out of their pockets. That's happened," he said.

The cyclists have averaged about 80 to 100 miles daily, six days a week, on the trip that has traversed Oregon, Idaho, Wyoming, part of Nebraska and now South Dakota.

"There are so many people that are out there that are so good and want to help a little boy who they don't know anything about until we roll into town," Gabe's father said. "It really makes you realize just how fortunate we are to live in such a great country where we can freely do something like this and show support for a cause and be welcomed by everyone."

They have numerous stories about people approaching them and inquiring about their purpose and giving them money. "We were eating dinner at a diner and a man walked in and threw a $100 bill on the table and said, 'This is for your dinner and the rest is for Gabe.' That is cool," Griffin said.

"Everywhere we go, people continue to say they want to see us win this fight," he said.

The bike trek has its own web address at www.Ride4Gabe.com that accepts PayPal donations and offers live updates about the cyclists, as well as videos and blog entries.

Reporter's note: Updated at 10:40 p.m. on July 17, 2014, to add information about the www.Ride4Gabe.com website.